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KRAS, ALK, EGFR … WTF?

21 Nov

Since genetic mutations can often occur with adenocarcinoma, Chip’s test results were sent to The Mayo Clinic for further analysis.  The oncologists had both laid out similar treatment plans for us based on various scenarios–intravenous chemo if there were no mutations at all, approved drugs if it were this particular mutation, what clinical trial was available if it were this mutation and if it happened to be the KRAS mutation, well, that was just not going to be good at all.  At this time, Chip is not eligible for radiation or surgery, because the cancerous tumors are widespread throughout his abdomen.

After several long days, the results finally came back, and it turns out Chip has a genetic cell mutation which affects 2% of adenocarcinoma victims called ALK translocation. It’s all relative these days, but we were ecstatic with this news, because both oncologists had said there was an approved and effective drug called Crizotinib or Xalkori to treat this particular mutation. 2%.  I always knew Chip was special.

We were desperate to start treatment, so we were elated when Dr. B, the oncologist at Johns Hopkins University, e-mailed us over the weekend, the day of Joe’s 3rd birthday party, indicating how great this news of the ALK mutation was. She was going ahead and submitting the prescription to the pharmacist so the authorization process with our insurance company could begin, and asked us to come in to see her in a couple of days for blood work and an EKG and to pick up the prescription.  Hallelujah!  The ball was once again in motion.  In the meantime, the tumor in Chip’s eye was starting to cause him significant pain and he had undergone his first of what will be monthly bone strengthening infusions, which ended up making him quite ill for a couple of days.

It’s game on now, cancer!

On Thursday, November 15th, after spending another full day at Hopkins, Chip popped his first pill at home that evening.  Just for good measure, we decided to celebrate by washing it down with a shot of Pappy Van Winkle’s.  Within hours, he was throwing up, and it was another long, long night in the Kennett household, but Chip is slowly adjusting to the medication. The pain in his eye has fully subsided, so we are hopeful this means his body is responding to the treatment.

Xalkori is considered to be a “smart” drug. Intravenous chemo poisons all cells–healthy and unhealthy ones. Smart drugs only target the cancerous cells.  They basically open the receptors or “doors” to the diseased cells, and allow the poison to travel in and eat the cancer.

Chip takes his medication at 8:30 AM and PM each day.  Every single time, I visualize those little doors opening up, the poison traveling in and EATing the cancer.  Eating it all up.  Isn’t that just the best visual??

– Sheila

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The Power of Kelly Clarkson

8 Nov

The wait for the pathology report to come back was bittersweet.  Ignorance was bliss to a certain degree, but we also desperately needed to know what type of cancer Chip had in order to start fighting it.  Dr. D had urged us to stay off the internet, but we were so anxious and wondering what type of cancer to “hope” for yet we managed to refrain.

Chip’s best friend from childhood, Chris Smith, affectionately called “Smitty,” flew in over the weekend to accompany us to our appointments. On November 5th, we met with Dr. D to learn the pathology.  Chip’s exact diagnosis is non-smokers, non-small cell lung cancer subtype adenocarcinoma – which basically equals not good.  There is currently no cure for this type of cancer, and it most commonly appears in 55-65 year old adults, so WHY Chip has this at age 31 years old, we’ll just never know.  Many have asked, and he has no family history, does not smoke, and it is not from mold or exposure to a harmful, chemical substance.

I once again went into a state of shock.  How could there be NO cure??  This is 2012!  We were riding home just stunned when Chip finally broke the silence and said, “You know?  NOTHING has changed since my diagnosis.  I still have the exact same cancer in my body as I did last week, and I have the exact same reasons and will to live, so let’s just fight this with everything we’ve got.”  He was exactly right.  Once again, Chip was the one providing me with the strength and confidence I needed.

So, the three of us headed to the nicest restaurant in Old Town, Restaurant Eve, for lunch.  The lunch special included your choice of cocktail called “Bittersweet” or a glass of wine called “Wrongo Dongo.”  That, coupled with the poor server enthusiastically asking us how we were doing that day, provided us with the comic relief we needed.  We were SO close to inviting him to pull up a chair, but we decided to spare him.  Then, we got in the car to go pick up Joe and this awful Brad Paisley song came on the radio that started out with the lyrics, “You’re not supposed to say the word ‘cancer’ in a song.”  I can’t make this up!  Laughter definitely turned out to be the best medicine that day.

The next day, which was known to the rest of the world as Election Day, we saw an oncologist, Dr. C at Virginia Hospital Center, and another oncologist, Dr. B at Johns Hopkins University, to further discuss Chip’s prognosis and treatment options.  In addition, within adenocarcinoma, we learned there are often genetic cell mutations, so Chip’s test results had already been sent to The Mayo Clinic for further analysis.  Since Chip was still feeling totally fine, both oncologists agreed it was better to wait and start the appropriate treatment than to just simply start chemo.  So, the wait began again.  We quickly learned this whole new cancer language over a 24-hour period and were repeatedly told Chip is otherwise a young, fit and “healthy” person with no other medical conditions, so he should respond well to treatment.  Since Chip’s age and diagnosis remains such an anomaly, there are really no statistics out there for him.  Everything they quoted us was for 55-65 year olds. So even though it was harsh to hear three separate times there is no cure, we were also told this is our path to chart.  Sort of like promises, we believe prognoses were meant to be broken.

After a nine-hour day of driving and meeting with oncologists, we were all exhausted.  Chip asked if he could use my iPhone.  The next thing I knew, Kelly Clarkson’s “Stronger” was BLASTing in the car.  The three of us started to laugh and sing “What doesn’t kill you makes you stronger” at the top of our lungs while dancing as hard as we could with our seatbelts on.  I kind of like to think we looked like an SNL skit going down the road that day.  We were so caught up in our new theme song that we actually drove right past our house, but Smitty flipped a bitch and we safely got home.  I have never watched American Idol and am not the biggest fan of her music in general; however, looking back, Kelly has never failed me.  She and I actually go way back as “Since U Been Gone” was my anthem about eight or nine years ago.  I am happy to welcome the power of Kelly Clarkson back in my life.

– Sheila